20 Years After Ryan White's Death, Mother Pushes AIDS Awareness

Twenty years ago, Ryan White died from complications related to AIDS. When White was diagnosed at age 13, he began a five-year journey that would make him the public face of a disease that many people knew very little about. Guest host Audie Cornish talks with Ryan White's mother, Jeanne White Ginder, about how she has kept Ryan's memory alive, and how she has taken on the role as an advocate for AIDS awareness.

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AUDIE CORNISH, host:

Twenty-five years ago, Ryan White and his family discovered something that would change their lives. He had AIDS. White was born with hemophilia, a blood disease that required regular transfusions. And it was through one of those transfusions that a 13-year-old Ryan White contracted the Human Immunodeficiency Virus, or HIV.

At the time, research about HIV and AIDS was still preliminary, and medical professionals did not routinely screen donated blood for the virus. There was also a lack of understanding among the public about AIDS and those infected with the disease were often subject to discrimination.

And it was in this climate that Ryan White became a very public face of the disease. He challenged stereotypes about who his victims were and talked about the prejudice he faced as someone with AIDS. Here he is in an interview with talk show host Phil Donahue.

(Soundbite of "The Phil Donahue Show")

Mr. RYAN WHITE: In my case it was fear and just because, you know, I supposedly had something in my body that nobody else had, or very few people had. And I think I just it's because you're different. I mean, I'm surprised we really have dogs nowadays because they're different. It's amazing how, you know, you can accept a dog into your house, but you can't accept someone because of their race, you know, their color or their religion or what they have in them.

CORNISH: Eventually Ryan White lost his battle with the disease. He died 20 years ago today, at the age of 18. Shortly after his death, Congress passed the Ryan White Care Act, the largest source of federal funding for AIDS treatment, testing and education. His mother, Jeanne White Ginder, has remained a tireless advocate for AIDS awareness programs. She's currently preparing for an event honoring her son at Indiana University in Bloomington. And Jeanne White Ginder joins us now. Jeanne, welcome to the program.

Ms. JEANNE WHITE GINDER: Thank you very much.

CORNISH: It's heartbreaking to hear his voice, because he sounds so young. And I was wondering if you can remember the day you had to tell Ryan that he was diagnosed with AIDS.

Ms. GINDER: Wow. You know, it was the day after Christmas in 1984. And I didn't know how much he knew about AIDS because Ryan was I knew he was very smart and he knew a lot about news and media and so forth, you know. And because it was a first of its kind, they wanted him to know. They didn't want him hearing it from anybody else. And so, I - you know, you don't know how to start. The preacher was in the room and my daughter Andrea was in the room. And I said, you know, Ryan, you've been really sick. And he said, yes, and I said, well, they say you have AIDS.

He said, just, let's pretend I don't have it. And I said, Ryan, we can't really do that because we have to take these precautions to keep you from getting sick. My daughter, Andrea, she said, mom, that's not what he means. And Ryan said, see, mom, she knows me better than you. He said, I just don't want every time somebody enters the room to talk like, poor Ryan, he's dying. He said, I just want to go ahead and go on with my life, okay?

CORNISH: What did that mean to you at that time hearing that diagnosis?

Ms. WHITE-GINDER: I think that just meant that he wasn't going to give up. I mean, you know, like, no matter what they say, you know, I'll decide whether I'm going to live and when I'm going to die. I mean, I just felt like he had this positive attitude of - he wasn't afraid. He wasn't afraid of dying.

CORNISH: One of the things that really brought Ryan to national prominence was when he fought his expulsion from his public high school. And that was in Kokomo, Indiana, back in the mid-1980s. Can you talk a little bit about that experience?

Ms. WHITE-GINDER: You know, our problems started - you know, we thought Ryan was only going to live three to six months. That was what they thought that he might live. And, you know, as he started getting healthier, he said, mom, I want to go to school, you know. He said, will you see if that can't be arranged. He said, I'm kind of smart. He said, maybe I could take a test or something, so I could be with my classmates at the end of the year.

And it was just kind of as he started getting healthier and watching him watch "I Love Lucy" and "Andy Griffith" and all them shows on TV, and the highlight of his day was his sister coming home from school, you know, because he'd have somebody to talk to. And I thought, what a waste of a child's life, I mean, it just seems like he's waiting to die.

And so, I thought, you know, Ryan, if you really want to go to school that bad, I'll be with you. I'll support you 100 percent. And the attorney told us that it could get really rough. And Ryan said, I can take it. So, I mean, there again, I mean, I'm just, like, you know, for the love of your children, you do a lot of things that you never thought you could.

CORNISH: And at the time it was there were parents in the community and the school board itself, I guess, basically evoked kind of old health laws to say that he couldn't be in school as a kind of quarantine.

Ms. WHITE-GINDER: You know, that's really hard to see a whole community become in such disarray because they're uneducated. I mean, we really thought that it would take one court hearing and we would have all these medical experts, we'd have the CDC and so forth on our side and people would be educated. But what happened was, I mean, doctors even disagreed with other doctors on how AIDS was transmitted at the time. And so, it became quite a battle of who's right and who's wrong and who do you believe, you know?

The infectious disease doctors are the only ones that really knew how AIDS was transmitted and they knew you couldn't get it. I remember asking the CDC, you know, I said, you know, this is really scaring me. I see all these gowns and gloves and masks going up in the hospital. And they assured me then, back in 1984, that no family member had ever come down with AIDS. So I kind of thought that maybe more people knew about AIDS than I did. But we soon found out that it was going to be a really hectic fight.

I mean, to see a community become just unglued, I mean, so to speak, and the prejudices that people felt and the talk of radio talk shows and the destruction that people were doing and calling Ryan fag and other things and saying he had to have done something bad or wrong or he wouldn't have got this disease. You know...

CORNISH: With that kind of stigma, how did you feel about Ryan's role at that age being the public face of AIDS?

Ms. WHITE-GINDER: Well, you know, as much as you want to protect your child, you also want to protect him in the aspect of convincing people of how AIDS is really transmitted, so it would be easier for him. I just felt like if we dropped the case, it's not going to educate people. So, the best thing we could do was continue that fight. And, you know, with Ryan and me, he was an observer. I mean, he knew he could make a difference and make it easier for other people with AIDS.

CORNISH: Now, you've been a constant advocate for HIV and AIDS awareness since Ryan's death, but what kind of stigma do you think that people who are infected still face today?

Ms. WHITE-GINDER: I think there's a lot of stigma still. Oh, wow. I mean, I think you see it in every aspect. If you're a teenager and you're wanting to go to school with AIDS, if you wanted to play sports, but I think for the general public, if it gets out that you have AIDS, I mean, you run the fear of losing your job, losing your insurance and so forth. So, I think it's the general perception that people remain quiet now. Most people are not very public about their diagnosis.

But at the same time, you know, that's okay, too, because we want people to live long and productive lives. Now that we have the meds and that most generally most people can get the meds because the Ryan White Care Act, the drugs, care and treatment, it enables people to live longer, productive lives. So we want people to live normal lives. That's what Ryan wanted to do. He wanted to be an ordinary kid just like everybody else.

CORNISH: And at the same time, there are a lot of communities, minority communities, certain regions of the country where HIV and AIDS incidence rates are increasing. And I'm wondering what it would mean to have a spokesman on the same level that Ryan achieved today.

Ms. WHITE-GINDER: I think it would be a great asset because I think there's nobody that's kind of representing people, especially people of a color and people - and especially women. The number of cases that are increasing with the Hispanic and African-American communities and young people. I mean, we know they're at risk. And I think we just need to stress how important education is all the way around and not to discriminate against people.

CORNISH: How will you personally be honoring the passing of your son?

Ms. WHITE-GINDER: Well, I tell you, 20 years just seems like it's just flown by. And I have all these events coming up and tributes to Ryan and just preparing kind of for them. Making sure that AIDS awareness is still in the forefront. I mean, it's a way to talk about AIDS and to get discussions going again, because we don't have a cure for the disease.

We do have drugs which we're fortunate, but people are still under the misconceptions that we have a cure for this disease. And, you know, Elton John is getting ready to do a tribute on the 28th of April at the Clowes Hall here in Indianapolis, and it's going to benefit the Elton John Foundation and the Indianapolis Children's Museum. So, you know, there's a lot of things going on that I'm excited about, the IU, the first one coming up is of course IU.

CORNISH: And this is Indiana University at Bloomington.

Ms. WHITE-GINDER: Yes. Indiana University at Bloomington. I'll be in Bloomington on the 9th and hopefully will set a campaign kind of to focus on education again.

CORNISH: Jeanne White-Ginder is the mother of Ryan White, who died of AIDS 20 years ago today. She joined us from Indianapolis. Thank you for joining us.

Ms. WHITE-GINDER: Thank you, Audie.

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